I just read a thought-provoking blog by Dr Dan Robotham of the Mental Health Foundation. He is leading a project with Bristol University’s Norah Fry Research Centre looking at whether direct payments for people who lack the capacity to consent to them offer real choice and control.
It’s got me thinking. My job is about sharing what is being learnt around self-directed support. As I understand it, this means helping people make choices and decisions about how they want to be supported so they are in control of the services they receive. But what about people who are unable to make decisions for themselves – can they really direct their own support?
In Dr Robotham’s excellent blog for Community Care, he explains how the Mental Capacity Act 2005 provides a framework for helping the most vulnerable people who need care and support (for example, some people with dementia or learning disabilities) to make decisions, and assess whether others may need to make decisions on behalf of that person (‘a suitable person’). He says “indirect payments” raise questions about “best interests” and whether decisions made are in the best interests of the person needing care or the suitable person.
In our book, Helen and I explore how to make decisions with people that lack capacity in a person-centred way. We write that people’s ability to make decisions is related to the opportunities and choices they have to make those decisions. Needing support to make decisions should not prevent people from having control over their lives.
Take for example Joan, 73 and living in a nursing home because of her dementia. When Joan was young, she couldn’t afford chocolate, but says that now she can, staff at the care home won’t let her because of her diabetes. Staff felt they had a duty of care to prevent her eating something that might make her ill. Joan was frustrated by the lack of choice and control. For Joan, chocolate meant a lot to her because while she was growing up with 13 siblings, in a two-up two-down with weekly visits to the pawnbrokers, it was considered an unaffordable luxury. The problem was that the staff didn’t recognise that Joan was perfectly capable of making some decisions for herself.
The decision making agreement is a person-centred thinking tool that reflects how decisions are made. When supporting someone in their decision making, it encourages us to consider:
- Do I fully understand what is important to the person and their communication?
- Am I the best person to support this decision-making?
- Is the information that I have and am giving the person relevant to the decision?
- Am I presenting it in a way the person can understand?
- Am I giving the information in the right place and time?
- Have I given the person the best chance to make the decision themselves?
People supporting Anna – a woman with learning disabilities who lives with two other people - wanted to make sure she had as much choice and control in her life as possible. They identified how Anna makes decisions and recorded it in a chart to share with the team:
How I like my information:
- In small amounts; I can read but can’t take in information very well.
- Spoken to me is best and picture books with examples can help.
- Factual and not emotional.
How to present choices to me:
- Tell me that I need to make a choice and give me a number options or pretend one hand means one thing and the other hand another; and then I can point to my choice or tell you the number.
How you can help me understand:
- Use a book with pictures in it describing the choice or relate the choice to TV shows I like.
- Help me by giving me facts. Don’t use emotional reasons or other people as reasons as I don’t relate myself to others very well.
When are the best times to ask me to make a decision?
- Early in the day, after my breakfast and tablets
- When I say “I’m cheered up today”
- When I have just shown someone something new I’ve bought
- When I’m out after church and I’m shopping
- Over lunch while out.
When is it not a good time for me to make decisions?
- From 4.00pm onwards as I get very tired
- Before meal times I get very hungry
- When I’m biting my fingers or punching my stomach
- When I’m repeatedly saying “I’m not in a bother”
- Before I’ve had my tablets.
This information then informs the Decision Making Agremeent, which can be recorded in a table that shows:
- Important decisions in my life.
- How I must be involved and who else can help with this decision.
- Who makes the final decision.
For Joan, this meant that in her decision making agreement, it set out that when it comes to eating chocolate, she could make the final decision:
“It’s my life. I know the consequences and the district nurse checks my blood sugar every day so she can advise me if it’s a safer time to eat it.”
It will be interesting to see the results of Dr Robotham’s study, due out in April 2013 and we hope that person-centred approaches like the decision making agreement can make a useful contribution to the very real challenge of offering true choice and control for all http://www.bristol.ac.uk/norahfry/research/current-projects .
